The Journey of Beckett Jude Rupp

February 21, 2013

UPDATE (2/21/13)
Beckett has been through a lot these last twenty-four hours. A lot is relative to where we are, but I guess it’s nothing in comparison to where we’ve been. Since Beckett had his PICC line removed they now have to poke him for his weekly labs. He has blood draws every Thursday morning around 2am. Last night they were unable to get his blood so they tried again at 4am. They were still unsuccessful. I came in this morning and he was very sleepy, he hardly even woke up for his occupational therapy (he had already had PT this morning). He just let her stretch him while he continued sleeping. His nurse said it is probably because of all the stress he underwent through the night. Cardiac babies don’t have a lot of reserved energy and when they get stressed they just tire out quickly. So, he slept a good portion of the morning and afternoon. He had a little mark on his head, just above his hairline this morning. I said something to his nurse about how he must have scratched himself, and she informed me that was actually one of the locations they tried to get blood. Oh, of course. I should have known. Well, since they weren’t able to get his blood over night that meant trying again this afternoon. Beckett has to have blood draws to follow for infection as well as monitor levels of his blood thinner. It took two more sticks before they were successful. Beckett handled it like a champ. He cried initially, but who wouldn’t, and then settled down while they “fished” for the artery. He actually tolerated it really well. He of course was mad and sweaty though, so he got a little bath and clean clothes. Then he had lots of comforting cuddle time with mommy. (I am putting up the picture of how zonked he was after the ordeal).
Speaking of him sweating. This kid is out of control. They other day one of his nurses put up a sign that said “Please don’t cover me in fleece. I get too hot. Thanks Beckett”. Well, that still doesn’t solve the problem entirely. I even brought in swaddle blankets from home because they are thinner and they have been making his bed with those. He still gets them wet with sweat. I took all of his laundry home last night and washed it so everything would be fresh and clean. I came in this morning and he had already gone through three outfits. Most likely because of all the attempts at blood draws. I counted tonight when Jonny and I left, and he had worn five outfits since ten o’clock last night. I think he is going to learn to do his own laundry at a very young age! I can’t keep up with that craziness.
I mentioned last night about the top of Beckett’s incision. Well, they have been cleaning the area throughout the day. His primary night nurse, Kathy, has been suspicious of it for a few days. Which, we are of course thankful she is keeping such a close eye on it. Tonight she went to clean it and rolled the cotton swab from the bottom of the scab and lots of puss came out. We were all a little shocked by how much came out since we thought it was just a little spot. Then she did it again and even more came out, as well as the scab came entirely off. It looked like a little divot. She called the doctor in to look at it. He called the nurse practitioner that works with the surgeon. They agreed they are going to watch it very closely as well as begin putting antibiotic ointment on it. It appears to be localized to that area rather than something more serious. His blood work from this afternoon also did not have an elevated white count nor has he had any kind of fever, so no signs of infection at this point. We pray that continues to be the case and that it begins to heal from the inside out. It is not particularly concerning at this point, but needs to be monitored closely as it is close to his heart and could be a direct route for infection should he get one. The nurse practitioner is also coming back tomorrow to look at it again. Thank you Kathy for following your instincts and paying specific attention to this!
I also spoke with speech pathology today as to when Beckett might get to try taking some food by mouth. They are in no rush, and said they have to be very cautious. Of course we would not want to do anything unsafe, but we are eager to begin tackling this challenge. She said at this point we are looking to be here for at least another month. That is not what I wanted to hear. We were initially told it would be about six weeks from surgery to home, and we have been here for about eight weeks already. Beckett apparently wants to take his sweet time. We are praying Beckett soars through this phase so that we may take him home with us sooner.
One good thing from the speech pathologist, Beckett is starting to have a little more of a voice! This is huge! She said when she was with him yesterday his cry sounded less like hoarse air and more like a voice. Now, it is still very soft, but it is voice nonetheless. My mom and I had been talking about the same thing yesterday. Within the last three days he has begun making a lot more noises: cooing, grunting, sighing, etc. You know, all the typical baby noises. I can’t believe how big, as in age, he is getting. It is so fun to hear all his sounds, and he seems to make more everyday, as well as get a little louder. It is crazy how much he changes each day. It is truly a thrill to get to spend each day interacting with him. He is just a little darling. I can’t wait for those of you who are attending one of the benefits this weekend to “meet” him. And for those of you who can’t attend, we look forward to him meeting you in the future. A friend of my in-laws came to visit me today and joked that we will need to sell tickets because the line of people wanting to meet him will be so long. It is humbling to know how many people know my son’s name, how many people pray for him daily, and how many people care for him deeply despite never having met him. You all have been, and continue to be, so kind to our family. We cannot express our gratitude for rallying on our son’s behalf.
Back in January, my mother-in-law, Linda, shared these verses with Jonathan and I. They are speaking about John the Baptist, but God gave them to her specifically for Beckett.
“He will be a joy and delight to you, and many will rejoice because of his birth, for he will be great in the sight of the Lord … and he will be filled with the Holy Spirit even before he is born.” Luke 1:14 & 15